Monday, July 27, 2020

Being Judged

In the past few months, I have had a hard time giving myself grace as I heal from all of these surgeries. I have had pain, and now that the pain is gone, I feel like it's taking forever to get my strength back.

This past week, my worst fears were realized as I learned that someone else was judging me too.

I have often felt overwhelmed with the effects of hydrocephalus and the related surgeries. I have often felt like I just can't deal with tasks, no matter how simple and basic they seem. I often feel like I am not good enough. Then a small voice tells me "My grace is enough."

2 Corinthians 12:9 ESV

But he said to me, (A)“My grace is sufficient for you, for (B)my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that (C)the power of Christ may rest upon me.

There are so many effects of hydrocephalus that affect me every day, that nobody ever sees. Many of these affect every area of my life, and I have to make moment by moment conscious efforts to push past them.

When I feel I am not good enough, He says "My grace is enough."

When I feel I am not strong enough, He says "I will be your strength." (Isaiah 41:10; Exodus 15:2)

When I feel alone and abandoned, He says "I will never leave you." (Deuteronomy 31:8; Hebrews 13:5)

When I feel I am unable to go on, He says "I am able" (2 Timothy 1:12)

I can do this with His help, but it will take time. If anything, all of this has given me an extreme empathy for those with disabilities that are not obvious to others.

I am learning how to give myself grace as I heal from 7 (yes, SEVEN) major surgeries since April, take care of my home and 3 children, and try to work my hair accessories business. I am blessed and thankful that I have help with the kids, but the other tasks take time to learn how to juggle all over again. 

I will not only survive, but with His help, I will THRIVE!

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Romans 8:38‭-‬39 ESV

Thursday, July 16, 2020

Impatient With Healing

One week ago today, I went to the hospital. Two days ago, I came home after 2 surgeries. I am feeling so much better! Pain is minimal, though it will take quite a while to get my energy back. Right now, I can only be up for 10-30 minutes at a time, then I need to rest for an hour or two. It's frustrating, but I will do what I need to do in order to not end up needing more surgery.

I am currently learning how to work my business from my bed and recliner. As I recover, I am currently looking for ladies who are interested in trying something new for their hair, and ladies who would like to join my team and earn a little bit of extra income.

Tuesday, July 14, 2020

I'm Bustin' Out of Here!

This has been a shorter stay than I had last month, and the medical team has been just as wonderful. But let's be honest: I'm tired of being in the hospital!
Dr. Piedra came in this morning and ordered my discharge meds and paperwork. I guess they decided that a patient who can walk the halls for 30 minutes to an hour at a time doesn't need to stay in the hospital. 😊
This is essentially what I looked like walking the halls.

I am looking forward to getting home, washing my hair, cooking my own food, and sleeping in my own bed. Soreness is already going down, so I'm also looking forward to using my Flexi Clips again. I love that my Lilla Rose products are never a problem on my head. We just had too many scans that required no metal in my hair, & the soreness in my neck from a new incision messed with my flexibility for a day or so.

The doctor and I are hoping that this will be the last head surgery for ten or twenty years. Either way, I know God has something planned for me, because I am still here.

The Lord is my strength and my song;  he has become my salvation.
Psalm 118:14 ESV

God , the Lord, is my strength;  he makes my feet like the deer’s; he makes me tread on my high places.  To the choirmaster: with stringed instruments.
Habakkuk 3:19 ESV

Monday, July 13, 2020

Relief

I had surgery this morning at 0930 to put the shunt system back on the inside. I have had a Ventriculoperitoneal (VP) shunt my whole life, since I was a couple of weeks old. This morning, my first Ventriculoatrial (VA) shunt was placed. My shunt now drains into the right atrium of the heart via the internal jugular vein. 
I don't know what to expect in the future from this, but I do know that I already feel SO MUCH better. It might be a while before I have the flexibility to do my hair nicely, but that will come with time. For right now, I am just thankful to get my health back. Pain has has been manageable, and I have been sleeping a lot today. I am looking forward to getting home in the next day or two.

Philipians 4:13

“I can do everything through him who gives me strength.”

Sunday, July 12, 2020

So Many Feelings...

I don't even know where to start with this. There is a light at the end of the tunnel, and surgery is tomorrow. I will be happy to get it over with and hopefully (prayerfully) have no more surgeries for a VERY long time after that. I am nervous about this surgery being different from past shunt surgeries. I am nervous about what it might mean for the fluid to drain into my heart. I'm try not to think about it, but here in the ICU, there is a lot of time to think.

Tim came to see me today. We played some card games, watched some TV, talked... then we said our "see you later." I cried as we held each other for 5-10 minutes. 
As we head into this next step, I am reminded that I am not alone, even when I feel isolated from everyone I love.

for he has said, “I will never leave you nor forsake you.” So we can confidently say,  “The Lord is my helper;  I will not fear; what can man do to me?”
Hebrews 13:5‭b-‬6 ESV

Behold, God is my helper; the Lord is the upholder of my life.
Psalm 54:4 ESV

“Behold, God is my salvation; I will trust, and will not be afraid; for the Lord  God is my strength and my song, and he has become my salvation.”
Isaiah 12:2 ESV

God , the Lord, is my strength;  he makes my feet like the deer’s; he makes me tread on my high places.  To the choirmaster: with stringed instruments.
Habakkuk 3:19 ESV

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26 ESV

Saturday, July 11, 2020

I Cried Tonight

Sometimes it's hard to be strong all the time. Sometimes, when you see someone fall apart, it's because they've been strong for too long. Usually, I feel like I have to be strong for everyone around me. Tonight, it got to be too much, and I cried for the first time since we've been dealing with these shunt problems... since April. Friends and family have been helping with the kids, Tim is working his usual schedule, and I feel like life is going on without me. I am allowed one visitor a day, and with the exception of Dad last month, they usually stay about an hour... I feel like asking for more is too much, too big of an inconvenience. Well, this too shall pass, right? In the meantime, I have the nurses to keep me company. 

Getting Real

This week and weekend have been rough. We are switching from a ventriculoperitoneal (VP) shunt to a ventriculoatrial (VA) shunt. This means my shunt will flow to the right atrium of the heart and CSF is absorbed via my blood stream, rather than finishing in the peritoneal (abdominal) cavity. What makes this scary for me is 1) this is a huge change and new territory for me after having a VP shunt for almost 37 years. 2) I have a tendency to build up scar tissue. The thought of this affecting a shunt that flows to my heart kind of scares me. Right now, scar tissue from the last couple of surgeries is causing some discomfort at the bottom of my ribcage. They say there is less chance blockage in a VA shunt, but I'm thinking about what happen on the outside of the catheter, & near my heart. 

No matter what happens, even though I don't know what the future holds, I know who holds the future in his hands. As I go through the storms of this life (like this series of surgeries), I will sing through the storm and raise a hallelujah. 

but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
Isaiah 40:31 ESV

Friday, July 10, 2020

Feeling Better, News of the Next Step

Dr. Piedra came in and talked to me this morning. I am feeling a lot better, but will be in the ICU until the shunt is placed internally again.
When he places it back in (likely Monday or Tuesday), I will have a VA shunt instead of a VP shunt. This means it will drain into the artery that flows to my heart instead of draining into my abdominal cavity.

A lot of the nurses recognize me from last month, even the ones who were on the othwr side of the neuro floor. "You're the one who was up walking laps last month!" It's nice to be remembered. 

Keep your heart with all vigilance, for from it flow the springs of life.
Proverbs 4:23 ESV

Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge him, and he will make straight your paths.
Proverbs 3:5‭-‬6 ESV

Thursday, July 09, 2020

Round and Round and Round We Go...

I have been having mild to moderate abdominal pain since my last shunt surgery. Last night, the headache came back for the first time in 3 weeks, and the abdominal pain got worse. It was still bad this morning, so after an appointment my son had, I ended up at the Neurosurgeon's office. They sent me to the Emergency Department, and by 1600, I was in surgery. This was my 18th shunt-related surgery, with 1-2 more coming. 

The shunt has been externalized again, and the new catheter will be placed in a different spot in a few days. Im started to feel like I'm going through a revolving door at the hospital. But I'm still here, which means God is not done with me yet.

Jeremiah 29:11
"I know the plans I have for you" says the Lord: plans to prosper you, not to harm you. Plans to give you a hope and a future. 

Tuesday, July 07, 2020

Reduced Pain

It has been 3 weeks since my last surgery, and my pain levels have gone down significantly. It still hurts to raise my arms high enough to style my hair, but it is improving (slowly). This slow healing has caused some delays in getting back to doing my LIVE demos in my Facebook group

Foods and drinks make my stomach hurt, which naturally makes me eat less. As a result, I have lost ten pounds in a week. Laughing still hurts, as does too much standing and walking, but I'm finding I can bend more easily than I could even last week. There is definitely a learning curve when recovering from a series of multiple surgeries.

Pain has also kept me sleeping well, which is difficult to handle when you have three kids to take care of. With the kids home, I am doing a lot more cleaning, which is definitely going to slow down the healing process.


I am thankful for the time I did have while the kids were with their grandparents, and the extra help I got for a few days when the grandparents brought them back.

Monday, July 06, 2020

Slow Healing

It has been four weeks since I went to the hospital, and almost three weeks since my last surgery. I have been very impatient with the healing process this time around. Have you ever hurt your abdominal muscles putting your hair up? It stinks! Especially when you are trying to be able to do demos for Hair Accessories.
Someone asked me what I expected the recovery time to be, and I realized I don't know. The last time I had four consecutive surgeries was when I was an infant. Last night, I started having nightmares of another malfunction. I dreamed that they had to take the whole thing out, shave my whole head, & put a valve on the other side. I'm praying that this one heals and works just fine for decades to come. Currently, the only pain is abdominal. 
The kids came home from Nonna and Papa's house on Friday. I have Nonna and Papa's help today and tomorrow. I'm praying that after that, I am able to handle them, & that they are helpful instead of causing things to be more difficult. I am using this to teach my children that God uses all things, the good and the "bad" to work together for good. When anxiety about it wells up, all I have to do is take it to Him.

And we know that for those who love God all things work together for good, for those who are called according to his purpose.
Romans 8:28 ESV

He has made everything beautiful in its time. Also, he has put eternity into man’s heart, yet so that he cannot find out what God has done from the beginning to the end.
Ecclesiastes 3:11 ESV

casting all your anxieties on him, because he cares for you.
1 Peter 5:7 ESV

Thursday, July 02, 2020

If We Are The Body...

I want to start out by saying that I am thankful that for the last several years, I have been connected to wonderful churches who have been the hands and feet of Christ by showing love to their neighbors.

But he, desiring to justify himself, said to Jesus, “And who is my neighbor?” Jesus replied, “A man was going down from Jerusalem to Jericho, and he fell among robbers, who stripped him and beat him and departed, leaving him half dead.  Now by chance a priest was going down that road, and when he saw him he passed by on the other side.  So likewise a Levite, when he came to the place and saw him, passed by on the other side.  But a Samaritan, as he journeyed, came to where he was, and when he saw him, he had compassion.  He went to him and bound up his wounds, pouring on oil and wine. Then he set him on his own animal and brought him to an inn and took care of him.  And the next day he took out two denarii  and gave them to the innkeeper, saying, ‘Take care of him, and whatever more you spend, I will repay you when I come back.’  Which of these three, do you think, proved to be a neighbor to the man who fell among the robbers?”  He said, “The one who showed him mercy.” And Jesus said to him, “You go, and do likewise.”
Luke 10:29‭-‬37 ESV

In 4th grade, one year after I became a Christian (accepting Jesus as my personal savior and putting my own faith in Him), my dad moved my brothers & me to a "better" school. I was bullied there from day one. When I reported it, the bullies had no repercussions (for the most part), but I got in trouble for reporting it.
Proverb 18:24 KJV was quoted at me regularly "A man that hath friends must shew himself friendly: and there is a friend that sticketh closer than a brother." They followed this with "You're just not being friendly enough."

One classmate that knew me from the previous school helped start the fire that would burn for years, and my brothers helped fan the flames.
And the tongue is a fire, a world of iniquity: so is the tongue among our members, that it defileth the whole body, and setteth on fire the course of nature; and it is set on fire of hell.
James 3:6 KJV

Two classmates, a handful of teachers & older students supported me & helped me survive. Larissa and Susanna welcomed me into their friendship, and made a bigger impact on me than they will ever know. They helped me through some of the hardest years. The Baker family had a major positive impact on me. I still have the notes of encouragement that Matt wrote me 25 years ago. Mrs. Love, Mr. Bowden, Mrs. Monds, Mrs. Napier, Mr. Edwards, Mr. Edmonds, Mr. Edwards, & Mr. Turnbull are the other teachers who saw me as me, not judging me by who I may or may not be related to. Not by the fact that I wasn't related to "the right staff" or best friends with their kids (who rejected me from the beginning).
I was different. First I was the new kid, then it was just that I talked funny. I was slower... just different. In the locker room, I tried to hide to change clothes, beause my scars from hydrocephalus were just one more way I was "different." I made it a point to not talk about my medical issues that made me different, even when it led to missed school days for EEGs and eye surgeries. I didn't want to give them more ammo. When I tried out for wrestling cheerleading, I was handed a stack of papers on how to lose weight. I still have nightmares that I will lose so much weight that I am literally skin stretched over bone, & people will still say I'm fat. To some people, I will never be good enough. 
In addition to the general bullying, I was judged by my brothers' actions. My family was judged for being a single-parent home, and who knows what else.

When my family started going to church there, I got reamed out for sitting with "the bus kids" instead of the ACS kids. I sat with the bus kids because they treated me with kindness and decency. I met friends among the bus kids that I may never have met had I not been subjected to such cruelty from they kids that thought they were better.
These are the verses I think of when I think of the public school kids I sat with in that youth group:
For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in:   Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me.   Then shall the righteous answer him, saying, Lord, when saw we thee an hungred, and fed thee? or thirsty, and gave thee drink?   When saw we thee a stranger, and took thee in? or naked, and clothed thee?   Or when saw we thee sick, or in prison, and came unto thee?   And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.
Matthew 25:35‭-‬40 KJV
They were a friend to me, but I overheard so many conversations in that public school group where they lived out the rest of these verses for each other. 

The kid that started it all came back in 10th grade and tried to undo what he had done, but it had been going on for 6 years at that point. Kids started treating me with a little more decency in my last 2 years there, but it was too little, too late. I had been beaten down long enough that I saw myself as worthless. One thing that didn't help was certain teachers and office staff telling me that I "had a big mouth, & talked too much." I tried to change because of this statement, and as a result, almost got a detention for disrespect from another teacher. (Because he didn't realize what was going on, & that i was trying to change myself.) I had teachers accusing me of not doing the reading assignment studying for quizzes and tests, because of the way my memory worked. I had no idea at that point what was wrong with me. I didn't know that my memory problems were connected to hydrocephalus, & that this problem was common/ normal with hydrocephalus. 

 I graduated 19 years ago, & my family is still not welcome on the property, & when I got in trouble for being there 7-8 years ago, people who shouldn't have known me from Adam knew "stories" & connected me to that.

At my 10 year high school reunion, I was told by several classmates that they admired me for not being in the "cliques," & that they had respect and admiration for my being a friend to everyone. Anyone could come talk to me about anything (even those who were mean to me when they were with the crowd). I am thankful that I learned this, but I wouldn't wish the method of learning on anyone. I was the reject, the outcast: I didn't have a choice. I accepted everyone, because I knew what it was like to not be accepted. 

To this day, I have to talk myself into trusting people. I can't make myself ask for help when I need it. I am thankful that in the last 3 churches I have been a part of, I haven't had to ask, because the churches I have been a part of down here are being the body of Christ. Instead of tearing each other down, they are lifting and building each other up. I want to challenge you to look at how you treat others. Do you treat them with kindness and respect? Treat others with kindness.
“So   whatever you wish that others would do to you, do also to them, for this is   the Law and the Prophets.
Matthew 7:12 ESV

A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.  By this all people will know that you are my disciples, if you have love for one another.”
John 13:34‭-‬35 ESV

Wednesday, July 01, 2020

A Difficult Time

This time of healing is a difficult time. After a certain amount of time, impatience and frustration sets in. I don't bounce back as quickly as I used to... Then I remember im older than I used to be. This means my body will take longer to heal. This particular time, I'm healing from FOUR surgeries at one time, and im not sure I was completely healed from the one I had 2 months prior before these were done.
What am I learning from this experience? 
To be patient: patient with myself, patient with my doctors when they don't listen, patient with God as He teaches me and shows me things, patient with my body as it takes longer to heal
How to ask for help: why is it so hard to ask for help? Is it because it makes us feel weak? Is it because we think others expect us to be able to do things without help? Is it because we're afraid of being an inconvenience to someone? For me, it's all of the above, to some extent. I end up doing too much because of this, which means I stretch out my healing time 😢
How to slow down and rest: What is this slow down? What is rest? How do you do that? Well, these past few weeks have forced me to learn, and thanks to  in-laws taking the kids, friends coming over to help, & a loving husband calling from work to check on me multiple times a day, I have the opportunity.